PA and homozygous MTHFR C667T - Treating with methylcobalamin

[Krissin21]

Hi

just wondering for those using methylcobalamin to treat their PA and have this gene mutation, how often do you receive your methyl dose?

Drs have been treating me with hydroxocobalamin for 4 months but has done nothing due to my methylation problems from this gene mutation. Found Integrative GP who is treating me for this now with methylcobalamin and gave me my first dose 2 days ago. I also have a number of other deficiencies such as zinc and magnesium and so he issued a personalised compound prescription for me. I seemed to be reacting to the niacin in it though, not sure if that will pass or not.

So I was wondering how often do u find u need the methylcobalamin shots? Trying to work out initial loading dose requirements. Dr said will depend on how I feel, but need some guide from other people's experiences. Would appreciate any advice thanks

[Clarealbinson]

My experience is probably way different from yours, but I am low in cortisol and this lowers my blood pressure considerably. Taking the methylfolate lifts it, so to know how much I need, I take my BP before a dose. My normal dose is 250mcg, less or none if my BP is ok and a little more if it's very low.

Clare

[Gambit62 Administrator]

There is so much variation in how people respond to any form of cobalamin that going from other people's experience isn't going to work and you may well be talking about such a small population here with the genetic variation that you mention that you won't even have a large enough group to even get a decent average from ... Your GP is correct - it will depend on how you feel and that is the best guide.

The normal regime for loading doses is every other day until symptoms stop improving ... with periodic reviews ... and I don't think that is just in respect of hydroxo - what tends to change is the frequency of maintenance shots.

[Serendipity16]

HI I'm interested to know if you are uk based and how you came to know about your gene mutation and what the implications are. TIA

[fbirder in reply to Serendipity16]

The easiest way in the UK is to get tested by 23andMe. It costs about £150 (there's a special offer of £125 at the moment). The implications are that you'll have masses and masses of fairly useless information that will get totally ignored by just about every medical doctor - with justification.

If you're interested in trying to find lost family members then it's worth being tested. If you're female and worried about having the genes that greatly increase the chance of breast cancer, then it's probably worthwhile just for the peace of mind. If you're male and want to know if you're likely to go bald - go for it.

But if you're the sort of person who is going to look at every one of the thousands of mutations that will show up : and worry that one speculative study on three people showed a 1.17 greater chance of having lurgy, then the added stress is much more likely to do harm than any good.

[cc120]

A great resource: b12d.org/

[fbirder]

There should be no need to expend time, money and effort in trying to source reliable, safe injectable methylcobalamin.

The MTHFR mutation that you have (as do I) reduces the body's efficiency at making methylfolate. So the obvious way to fix it is to supplement with methylfolate.

Suppose you had a factory that makes sandwiches (methylcobalamin). You use sliced bread (folic acid) for the sandwiches. But the person who slices the bread (MTHFR) is not very efficient. That means the production of sandwiches slows down drastically.

There are two ways of fixing the problem. You could spend lots of money on buying ready-made sandwiches (inject methylcobalamin). Or you could spend a little more money and buy sliced bread and use that (supplement with methylfolate).

Actually, the situation is a bit more complicated than that. Methylcobalamin is just one of the things methylated by methylfolate (it's a cheese sandwich). There are other reactions it takes part in (other types of sandwiches). So taking methylcobalamin is like buying just cheese ready-made sandwiches. Taking methylfolate allows the factory to make all the other types of sandwiches.